[adelaide56Participant]

After a SCT and nearly 2 years remission my husband started on the Carflizomib infusions last week and was very unwell at the weekend.

He had to be admitted to hospital and get his heart checked as he had chest pain and was breathless.  Luckily it wasn’t his heart.

He is very anaemic and will have a blood transfusion in the morning , which will hopefully perk him up.

So, once again life feels like it is on hold again while we spend endless time at the hospital…feeling quite low to be honest.  It’s very isolating at times because others can’t understand if they haven’t experienced it.  I expect I shall feel stronger once I have got back into the routine and have an idea of what to expect again.

• This topic was modified 6 years, 6 months ago by  adelaide56.

[tmcintyreParticipant]

Hi,

I can understand how low you must be feeling to be back into the routine of hospital and treatment.  We’ve been on this journey since December and I sometimes wonder if that’s our life forever – my husband hasn’t got to SCT yet so not experienced a break from it all.  Despite trying to get on with life its hard when he is always tired and gets breathless so easily.

I hope all goes well with you both,

Teresa

[adelaide56Participant]

Hi Teresa

Thanks for your reply.  We have had a better week this week and some family time today, which has cheered us up no end!  It’s a hard slog and as you say, not always easy to do things when he’s feeling so tired.  But we will cope.

Hope your husband gets to a remission before too long.

Take care

x

[bandityogaParticipant]

Hi Teresa

My husband started carfilzomib and dex last week and I am praying it works as his FLC were 12000 before treatment. It is such a long time spent in hospital for the infusion but I go for a walk or a swim whilst he is having it.

It is five years since he was diagnosed and got 18 months remission from SCT in May of 2015 but other treatments haven’t worked for long and we are running out of them.

If the treatment is working after the first cycle we are adding revlimid through our private health. Taking one day at a time.
I hope it won’t be too long until your husband gets into remission.

Maureen

[tmcintyreParticipant]

Hi Maureen,

Thanks for the update, I hope Carfilzomib gets to work for your husband.  We are waiting for results from my husbands bone marrow biopsy to see what the next step is – SCT or some kind of PACE treatment has just been mentioned.  My husbands bloods are completely clear, its just the bone marrow showing disease now.  He is on Ninlaro and Dex.  He did have Revlimid too but he came out in a drug rash near the end of the last cycle so Revlimid has been dropped this time.  I presume his consultant wants to continue with the Ninlaro as he had to apply for it as a trial drug and I think if you stop it you cant get back on it.

Best wishes

Teresa

[patsyannParticipant]

Hi Maureen and Teresa,

Can I ask how your husbands are doing on Carfilzomib now? My husband has just been taken off Pomalidomide as it isn’t working after 2 cycles and we’ve been told we should consider moving to palliative care as he’s not really had a good or lasting response to anything and is now at 4th line treatment. He did get 15 months at a good level following SCT in 2014 but that wasn’t enough to go for second SCT. We hadn’t expected to have reached that stage yet  when there are treatments still untried so we’re a bit shocked. Seeing another consultant next week for second opinion but trying to gather what information I can before then. He was diagnosed in 2013 and has had CDT, Revlimid and Velcade in the past.

Pat

[patsyannParticipant]

Sorry, Teresa, that last post should have been to Maureen and adelaide56. Brain not functioning properly.

pat

[adelaide56Participant]

Hi Pat

MY husband has just finished 2 cycles of the carfilzomib, it has been problematic as the drug was attacking the red blood cells and platelets, but not making any difference to the myeloma levels.  Anyway after some difficult weeks with many days at the hospital having fluids, blood transfusions and platelets, we have finally had a better week and some lowering of the myeloma light chains.

His kidney function is better also as that was affected too.  So we are hoping that it will compntinue to improve things and he will tolerate the treatment better.

now a neighborhood of ours has the exact same cancer and started on this treatment at the same time and has been absolutely fine !  It is so individual this disease, what works for one person doesn’t necessarily work for another.

Best wishes

good luck with everything

Adelaide

 

[patsyannParticipant]

Hi Adelaide

Many thanks for your reply,and for the good wishes which are very welcome at the moment. The effect on red blood cells and platelets has been an issue for my husband with Revlimid and Pomalidomide so that would be a concern, but as you say everyone’s reactions to specific drugs are different. He did better on Velcade. It’s also interesting to know that your husband has had some lowering of the light chains after two cycles. David’s response is measured by pp levels but his consultant seems to think that if there’s no favourable response after 2 cycles it’s unlikely to happen – although I suspect his may actually have risen.

I hope your husband’s improvement continues. Best wishes to you both for the future.

Pat

[bandityogaParticipant]

Hi Adelaide

Ian was taken off carfilzomib aft 2 weeks as his kidney function , platelets and blood were all off. This was his 6th line as nothing really worked for long except his SCT which he got q8 months remission. He’s now on palliative care at home and think he will not last long.

Feeling devastated but also accepting as this has been 5 years of a roller coaster. He is a loving and kind husband and I will miss him so much. I do hope there will be a cure soon but sadly not for us.

Take care x

[adelaide56Participant]

Oh Maureen,  I am so sorry to hear this.  Sending you and your husband our very warm wishes.

it all seems so unfair.  x

[patsyannParticipant]

Maureen, I too am so sorry to hear this. We may be in the same situation after we see a second consultant tomorrow. My husband David is four years on from diagnosis and at fourth-line treatment but his consultant thinks more treatment may cause more problems than it solves. It’s so hard to accept. Thinking of you both.

Pat

[bandityogaParticipant]

HI Pat

Ian didn’t respond to velcade nor pomalidomide and had 5 cycles of farydak which gave him terrible diaherra and then stopped working.

I am caring for him at home with help from hospice at home and nurses from our gp practice. It is really hard work as my son and his family live in Edinburgh and my daughter is in London. Ian and I have good friends who help out too. I had a blow out today as I had just changed our beds and as Ian is now having mobility problems the nurse put a sheath and bag to collect his urine. The sheath came off and he wet the bed and the carpet. I am so exhausted, too many visitors. Perhaps need a day of respite or reconsider the hospice.

I hope they find a treatment that works for your husband.

Maureen

[patsyannParticipant]

Hi Maureen

Thank you. I’m veering between hope and paralysing fear at the moment.

Family and friends do their best but I think this is a time when you do really feel you’re on your own. I think you might be right to consider the hospice, or at least some respite care if you can get it. At least you would get some rest. And if someone else is responsible for the practical care you can concentrate on sharing the love and comfort with Ian that you’d both want. God bless, whatever you decide.

Pat

[bandityogaParticipant]

Said goodbye to my loving husband today. The service was very emotional as Ian wrote it himself. There was a huge turnout at his funeral as he was both liked and loved by many.

He tried so hard to beat his and I did help with all the research I did but sadly after 5 years all treatments stopped working and he is now at peace.

I will miss my loving gentle husband so much but after I have finished mourning, I will get out and live every day.

Maureen

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